hi all, this is my first post as my partner has in the last 48 hours been diagnosed with PV. She’s 34. Her consultant at the minute isn’t very helpful and hasn’t provided a lot of into which has left us both very upset and scrambling to find out everything we can. Our first question is does PV drastically shorten her life expectancy? Or is it something she could potentially live into her 70’s with even well managed? She has no symptoms and it was only caught by chance really.
she starts venesection next week and is now taking a low dose aspirin from today. Any info/help would be greatly appreciated. No doubt I’ll keep updates going.
thanks in advance
Written by
Ppjd
To view profiles and participate in discussions please or .
Stop. Take a deep breath. Turn off Dr Google and head over to the excellent resources on MPN voice website and on blood cancer uk website. Have a scan through some of the older posts on this forum. The initial shock of the diagnosis of MPN feels like a cloud of doom over you but when you get some decent and up to date information you can start to understand the diagnosis better. There’s a number of people on here that have and are living full and rewarding long lives and I’m sure they will be along to offer further reassurance shortly
Thanks very much, this website is excellent and really is helping the anxiety and fear. And reading the many posts from people in the same situation. Hope we can get to the stage of responding to other peoples queries in the same vein! Thanks again it’s very much appreciated.
My husband had PV diagnosed about 10 years ago and I well remember the awful worry about it and especially the whole life expectancy question. It probably took a year to settle into the routine of living with PV but WITHOUT that sickening fear and that is down to MPN Voice and this forum AND a wonderful woman called Maz who runs the show! We now focus on managing the symptoms and trying to live as normal a life as possible. I suppose it’s like having Diabetes - you just manage it and keep on with your life. My husband was linked up to a haematology department (Raigmore Hospital, Inverness) and has telephone appointments every 2-3 months with a haematology nurse, following a blood test at our local surgery. Our GP is very understanding and has done lots of research. One thing he told us recently is that PV is more common/more often diagnosed nowadays than what was previously believed. My husband has venesections every few months depending on blood results. He’s on strong painkillers, because one of his main symptoms is muscular pain. He is self-employed so he can take a nap when he gets tired - his other main symptom. We’ve just become used to his routine. I’ve come a long way from the day I burst into tears at a family information day. It’s very scary at first, but I promise you, you will feel better about it very soon. Keep an eye on this forum and look back at threads that will help. As already noted in another post, get your info from the MPN Voice website. All the best to you both. We’re all with you and here to support one another. ❤️xx
PV was more risk in the past before they know how to take care of it. You will find Drs are careful to control hematocrit (HCT) For women it's best not over ~43. With that, the risk of complications is much less. They didn't know this in years past.
Being symptom free is a great start.
At that young age, you won't want to use venesection as a long term solution if possible. It is good for quick HCT control however.
You should discuss with your Dr interferon INF (Pegasys and Besremi) as a long term option. These can control the HCT in most patients without the imbalances that venesecton causes. Not everyone tolerates it but most are able to have this therapy. INF also can prevent progression and even reverse the disease in some patients. INF is only recently becoming widely accepted as an MPN treatment option.
I second EPguy’s input here. I was diagnosed in my early 40s and lived a full life with phlebotomies and aspirin until age 60. But during that time, my PV was quietly progressing. I’m guessing I would have made it to 70 without going on a drug, but once you’re 60, 70 just doesn’t seem like enough.
If I would have know then what I know now, I would have explored getting on an interferon sooner. I’m taking one now and continue to feel very good, but it sure seems better to take something that might stop disease progression before the disease progresses.
I’d recommend getting a GREAT doctor (see Hunter’s list below) and exploring Pegasys or Besremi. And then live life.
Agree on the age thing, at 20 I figured those crusty 60s creatures were a different species. I've now mutated (figuratively and literally) into one of them
It really is an anxious time when you’re first diagnosed with an MPN. Likewise, the medical terminology, the disease itself and to treat/not treat is mind boggling it all takes some time to fully comprehend. But you will get there. I’m still learning after six years!
I note that you’re based in Ireland. There are some highly rated haematologists specialising in MPNs in Cork and Dublin, so if travel permits, no need to stay with unhelpful haematologists. You need to have trust and support in your healthcare Professional.
It maybe helpful if you look to the right of this page under the heading Topics, if you click on Forums and scroll down you will be able to view on YouTube a recent forum (May2022) from Cork. The haematologists I’ve previously alluded to are on there.
It’s never nice being diagnosed with an MPN, but the treatment to control and even potentially halt the disease process is really at the cutting edge. It would be in your wife’s best interest being so young to have a consultation with an MPN Specialist to see if she would benefit from treatment such as Pegasys.
Hello and welcome to the forum. Glad you found your way here.
There is a lot to learn about PV. Fortunately you will both have plenty of time to learn about it. Historically, most people with PV live a near-normal lifespan. Lifespan is improving with the newer treatment options. We have more options now and more options are becoming available.
One of the most important things to do is to consult with a MPN Specialist. Most doctors, including hematologists, have little experience with MPNs due to how rare they are. It is essential to involve a MPN Specialist to ensure optimal MPN care. not sure what part of Ireland you live in, but here is a list that is international. mpnforum.com/list-hem./
I was diagnosed with ET about 30 years ago. It progressed to PV about 8 years ago. I have lived a rich life and at age 67 continue to do so. there have been issues to manage, particularly in the last several years. We often have to deal with secondary/constitutional symptoms that are more bothersome than the risk of thrombosis. Fortunately, there are ways to deal with these challenges.
It is important to learn ore about PV and how to manage it. there are very good resources available. Here are a few articles to get you started. Starting with an article about normal life expectancy with PV being possible.
Well top of the morning from Cumbria!You poor loves.. What a rotten shock. I remember it so well.
I was diagnosed with PV 14 years ago at the age of 54.
Had a haematologist whose bedside manner was appalling. Barely told me what was going on, gave me an utterly frighting prognosis, and I wandered out wondering whether I d ever live to see my grandchildren. Now have 3.
Since I was diagnosed this is what I’ve learnt ( I ve buddied almost 40 newly diagnosed PV patients ALL feeling exactly the same as you do, and as I did. )
1) this is ABSOLUTELY NOTHING to be terrified about. Do not either of you be frightened.
2) life expectancy is near normal and probably will be normal by the time your lovely partner is 50. Research is moving on apace and new drugs being developed all the time.
3) I look at it as being like diabetes - treatable
but not yet curable
4) you ll read lots of posts on here from folk who might be feeling like you do, or fatigued, or generally not so good. For every post you read there are hundreds nay thousands of PVers out there, all over the world who are tickety boo and living life to the full.
Hi, of course you’re both upset and anxious. Folks on this forum really understand because we’ve all been there. You’ve had some really good advice already about where to look for trustworthy information. This forum and MPN voice website is monitored by Maz and her team, so there are no issues with the validity of the info, etc. An MPN specialist is a must too.
Otherwise, it’s eat a healthy diet, keep hydrated, exercise as and when she can but rest also when the fatigue hits. As others have said it is not a death sentence. There are many on this website who are still alive and kicking after many years.
Look out for Maz’s posts about forums. They were online because of covid but I think some face to face may be in the pipeline. They are a brilliant way of meeting others in the same boat, getting essential info and getting your questions answered. What my hubby liked was the splitting up of groups, so there was one for the family of those who have an MPN.
Above all keep asking and posting. When your partner does see the haematologist again, ask for a second opinion with a haematologist who specialises in MPNs, go armed with your questions written down and make sure you both get answers. Remember the folks on this forum are hear for you and your partner.
MPN Voice and all the amazing people on here are so so supportive and a font of knowledge.
I too have just been diagnosed with PV and initially worried but information I have from folks here and on main site for MPN Voice are invaluable.
Very important to get connected with an MPN Specialist and an understanding GP who will support you and learn about your PV if they do not know about it.
I have learned, to advocate for yourself is key. Do not accept being brushed off or ignored. Spend time getting to know important facts about this disease and potential treatment options.
Everyone it seems is so different so very much an individual care plan.
Write questions down for appointments. If you can go along with your partner even better as sometimes it can be so technical and taking it all in is hard, especially when its about you. Take notes for her.
Depending on where your partner lives, I know there are excellent MPN Specialists in Cork and Dublin. They may even help with identifying some near you if not on list shown here.
I was diagnosed with PV almost 2 years ago. I was 38. It has been hard, I will not lie. I have a little girl who I want to see grow up. But I went straight to MD Anderson and have been seeing one of the best MPN specialists. He is wonderful! He reassures me every time I go that I can live a normal life. He basically said it is all about management. He encourages me to live life without restrictions. I have been on aspirin and phlebotomy, but my wbcs have changed and platelets have always been really high. So I am about to start Besremi. This drug has the potential to change the lives of people with PV. I agree with someone else’s advice of stay off the internet! I have done those searches myself and they can be disheartening. My best advice is to live your life. I am lucky to have family support which helps. And I highly recommend she see an MPN specialist. My doctor said it is under reported in young people and 1/2 of the people who have this are young. I have faith in my family and my doctor that I will be able to live to see my grandchildren. I hope this helps. I know it can be a scary time, but the fact that they have a new drug just shows you how advanced medicine has become. I do believe her future will be bright!
All, I’d like to thank everyone who’s responded with positive advice. It has helped enormously and enabled us breath a little bit easier. I came across this website by chance and I wish we’d come across it instead of googling PV first (which we were left to do after consult). We do still have millions of questions such as can we still fly long/short haul. Is pregnancy a concern for her along with treatments etc. we’ll be taking peoples advice and seeking out a local MPN specialist one of which attended the recent forum here locally. Again thanks a million. No doubt I’ll have loads more follow up questions for you all.
I can answer one of those questions. My MPN doctor said flights are no problem as long as you are being treated. I asked him the same question because we love to travel and are going to Europe this year. However, I wear compression socks daily at work and try to exercise and walk. But these things were not “recommended” as a mandatory thing. As far as pregnancy, I can’t help. I had just had my daughter like 2 years before and being older we just decided she would be enough. So my husband had a vasectomy the following month after my diagnosis since I can never take any type of hormones. I have heard of people having babies with PV but not sure what you would have to do to ensure the safety of mom and baby.
Hello and you can rely on the information in this site. The messages show real people who have gone through what you are dealing with no now.I knew something was wrong with me when I was about 36, but too busy at work to see my GP. I gave a blood donation (my 29th) and it showed the blood being very thick and heavy, and I was so diagnosed with PVR. That was 1983. I am still alive and recovering well from a hip replacement. I have been to the Philippines and Singapore just before covid broke out and had no problems with travel.
I am 76 this month and still enjoy life with an active brain and normally fully able body.
Your wife should expect to live a pretty normal life.
I was also diagnosed with an MPN in my 30's and have two young children now. It's a disease that can be managed for a very long time. It is very important to seek out a MPN specialist for your wife to get the best treatment - General hematologists just don't have the experience. We're a rare group.
Thanks Emmyroos. It’s very reassuring to hear stories such as yours. I think it was the initial lack of info which frightened the life out of us, the more info we gather with thanks to you and the rest of the MPN community the more relaxed me feel.
I've had PV for 14 years. Venesections and low dose aspirin. I'm 66 and was told I'm more likely to die with it than from it. Life expectancy is normal. As others have said don't look at Dr Google. Best source of reliable information is MPN Voice and this forum. We all deal with the situation differently. I guess in one way I was fortunate in GP and haematologist both said "you make too many red blood cells". They never called it any other scary words. When I tell people I say have a blood problem I make too many red blood cells. I think subconsciously this has helped me cope. We are all different and cope in different ways. We are members of a unique club.
I do the same... I call it a "blood disease." That helps my mindset also. I had a doctor tell me that with MPNs new definition, it is technically a "cancer" but its behavior is not like conventional cancers.
I agree the more delicate word is nicer. My 1st Hem refused to use the C word. But since it got the big C, it has attracted loads of research and so many trials are now under way.
Update - went back to Hem Con today with my partner, she’s had two venesections and her HCT’s have dropped from .54 to .45 which he was happy with. Next blood test in one months time will determine next venesection. Consultant said as my partner is so young (34f) it will progress to MF 100%. But that it might take 10/15/20 years.
We’ve set up an appt with an MPN specialist who recently gave a presentation at the MPN Voice forum in Ireland.
Your haem is right but you shouldn’t be confused with the natural history of PV which is always myelofibrosis, and life expectancy. Progression from PV to MF can take 5 to 40 years in 100% of patients, but life expectancy for MF post-PV could add another 10 to 20 years.
I was not aware of a 100% progression over any time period. Is there more info on that?
From the Ropeg study, it's possible that what ever the progression %, we can influence it. Over their 5-7 years study, IFN-a had an apparent large effect on progression.
This study gives a more familiar number, but as like many, it's not clear what time period is used:
<<both (ET,PV) carry the risk of progressing into post-ET-MF or post-PV-MF (also termed secondary MF (sMF)), occurring in approximately 15% of patients and also the risk of leukemic progression.>>
Hi EPguy, haems are talking about natural history of PV. In other words, the progression of PV in the absence of treatment, ie ~100% MF on the long term.
This is quite possibly what he meant by 10/15/20 years for progression. Not taking into account the treatment my partner will presumably be on which will hopefully prolong progression.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Newly diagnosed with PV 
Recently diagnosed with PV
Newly Diagnosed (9/2017) with PV and ET
Newly Diagnosed and Clueless
PV ?MF weight loss and fatigue 
